Feeding yourself, hypermobility and photo challenges

🎉 Greetings from NURA Dispatch, the NURA Community newsletter dedicated to all things Long COVID and ME/CFS, and our digital community for people battling these illnesses.

📝 This newsletter features community highlights, upcoming events for your diary, and research snippets.

GUEST EVENT
👩‍🍳 The Long COVID Chef: Feeding Yourself

Before developing Long COVID, Taryn Marquez was an Executive Chef. After being diagnosed, she founded Bloom-19, an advocacy initiative. Taryn views this period as both the most difficult and transformative in her life. Through Bloom-19, she empowers others with free, weekly, cognitively friendly, and energy-saving recipes, aiming to dismantle ableist narratives around food preparation and encouraging people with chronic illness to cook in the easiest way for them.

📅 Sign up here for our event with Taryn on Saturday 22nd June @ 7PM BST for a range of practical tips, tricks and advice on nutrition. Themes covered will include food as a form of self-care, wellness trends, managing MCAS, and adaptations while cooking.

🎉 Are you new to NURA Community? Welcome! Here’s a few tips to get you started:

📅 Attend our events. Check out our upcoming events on the ‘Events’ tab on the right sidebar. We host fortnightly Zoom social hangouts, as well as Guest Speaker talks on specific topics. Our guest speaker talks For May and June are on autoimmunity and nutrition.

📱 Get the app. NURA Community is better on the app. Download the "Mighty Networks" app from either the Apple app store, or Google Play, and search for NURA Community. It's simple to sign up and log in. 

🖊️ Create a poll or ask a question. Just head to one of our “community lounges”, and click on the pen symbol in the app or "create” in your web browser, then select the "poll" option. This is a great way to engage with other members. Recent question:

🔍 Search. Type key words or phrases into the search bar in each space to find content on specific topics i.e. "research", "brain fog", "mental health" or anything else

SOCIAL
🖥️ Zoom fun

👫 One of the best things about NURA Community is the space it provides to meet and connect with others. Our regular Zoom social sessions are a great way to do this. Conversation ranges from serious to light, and you can share your experiences, offer support, and simply enjoy the company of others who know what it’s like to live with Long COVID or ME/CFS.

Our next session is Tuesday 21st May at 11:30AM EST. Sign up here.

Can’t attend? Answer our poll to let us know which times work best for you.

RESEARCH
🤸‍♂️ What is hypermobility?

💊 A new research study at the University of Leceister is testing the effectiveness of the drug tocilizumab for Long COVID. “We have previously shown a link between the severity of ongoing health impairments and inflammation. We believe that tocilizumab, which is already used to treat patients with acute COVID-19, may be effective in treating patients with Long COVID by reducing inflammation.”

🤸‍♀️ What’s the link between ME/CFS, Long COVID and hypermobility? Research shows that people with hypermobility are 30% more likely to develop Long COVID. Additionally, a study of 815 patients with ME/CFS, published in March, using data from the charity Solve ME, found that some ME/CFS patients also have joint hypermobility, a condition in which the joints easily move beyond the normal range expected for a particular joint. In multiple domains, those with joint hypermobility experienced more severe ME/CFS symptoms, including worse physical function and more pain, highlighting a potential subgroup within ME/CFS patients that may benefit from special attention. Read more here.

🎙️ How can you ‘phenotype’ your Long COVID? This interview between journalist and patient advocate Gez Medinger and Dr Eric Gordon discusses how to identify which “subset” of Long COVID may affect you. Phenotyping will be of increasing importance in diagnosing, researching and treating Long COVID, and scientists think we are likely to end up with perhaps six, seven or even more separate non-exclusive phenotypes that represent Long COVID as a condition in its entirety.

MEMBER SPOTLIGHT
Win of the Week: Art

“I’m always hesitant to share my work in its early stages because it’s still so rough, but it’s been such an accomplishment to just be able to sit down and pick up my brush, so I’m trying to celebrate that. I’ve switched from an acrylic underpainting to an oil grisaille, as I’m only able to work in short bursts right now, 15-30 minutes at a time at most (very different from my usual 6+ hour painting sessions).”

See NURA member Mercy’s post here.

ME AWARENESS DAY
Calling for photo submissions…
#MEInFocus

📷 To mark ME Awareness Day, we're asking for photo submissions on the theme of strength.

💪 What does 'strength' mean to you in the context of your illness? Has your relationship with the idea of strength changed over time?

Join us in shedding light on the incredible resilience of the ME/CFS community. Here's how to take part:

1. Capture a photo. Using a smartphone (or camera, if you’d prefer), take a photo that represents 'strength' to you. This may be a moment of triumph, a symbol of resilience, or a glimpse into your daily life. It's entirely up to you, and you can be as creative as you'd like.
   

2. Write a caption. Add a caption that provides context and insight into your interpretation of strength. Share any thoughts or personal experiences that inspired the image. The caption can be as short or as long as you'd like.
   

3. Submit your entry. Send your photo and caption to [email protected], or just reply to this email. If you’d prefer, you can send it to us via Instagram @nuracommunity. Be sure to include your name (or preferred pseudonym) and any social media handles you'd like us to credit when sharing your submission. Equally, if you don't want us to mention you, just let us know.
   

4. Spread awareness. Help us amplify the voices of the ME/CFS community by sharing this post with your friends, family, and followers. Use the hashtag #MEInFocus to join the conversation and raise awareness about the challenges - and triumphs - of living with ME/CFS.
   

We’ll share the images and collate entries received into a collaborative photo project, amplifying the voices of the millions living with this illness.

WHAT TO WATCH
The PACE trial for ME/CFS

🎬 If you're unfamiliar with why the PACE trial is so widely discredited, a video posted yesterday, garnering over 20,000 views within a day, gives a clear explanation.

🛠️ Some helpful things…

That’s it for now! Until next time.

❓ If you have any thoughts, comments or questions on anything in this newsletter, just reply directly to this email. We’d love to hear from you.

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